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Kidney Mass-- Frustrations and Questions

RussellD
Posts: 2
Joined: Oct 2019

Hi everyone,

I'm a 57-year old male and new to this board. My doctor found a small mass (2cm) in my right kidney about six months ago by accident (no symptoms) that is suspected to be Renal Carcinoma.  I was set to have an ablation done a couple of weeks after that discovery, but my insurance (Blue Cross Blue Shield of Indiana) nixed it--- saying an ablation is an unnecessary surgery since I have one good kidney and I'm healthy enough to have a partial neprectomy.

We have tried to appeal with no luck, so now I'm scheduled to have a partial nephrectomy right after Thanksgiving.  My doctor didn't seem too concerned about waiting since he said these type of tumors are usually very slow growing, but almost always cancerous.  He does think that at my age I should definitely have it taken out-- he said if I was older than maybe it would be best to just observe..

I wanted to have the ablation because it is an outpatient surgery and would allow me to go back to work in days-- not weeks-- and seems like it would be a lot less trouble to go through.  My doctor says I'll have to plan on at least two weeks off and 2-4 days in the hospital following the surgery.  While I'm relieved they discovered this, I'm nervous about having the partial nephrectomy surgery and still don't understand why this would be considerd a better option than the ablation-- plus it's going to cost the insurance a lot more for my hospital stay.

I was also surprised when the doc told me that I would need to plan on taking two weeks off of work-- I have a desk job that is not physically demanding.

I'd be interested in finding out what the recovery was like for others who have gone through the robotic partial nephrectomy? Is it really two weeks? Also anyone had any luck getting their insurance to change it's decision? And, anyone else just decide to do the observation route and why? My concern is going through this surgery and then finding out the mass wasn't even cancerous.

Appreciate any feedback.  

 

 

medic1971's picture
medic1971
Posts: 190
Joined: Sep 2015

Hello RussellD,

 

At 2cm there is an 80% chance this is cancer.  At that size surgery is curative no chemo and no radiation.  I am surprised that the insurance company is pushing back and wanting to do surgery.  I say this because ablation is cheaper than surgery.  This is only a guess but, some tumors are not in ideal place for ablation, so maybe that is why your insurance company is pushing back.  I will say that a partial nephrectomy is the gold standard for treatment.  I had a robotic partial nephrectomy done 4 years ago to remove two tumors from my right kidney.  I spent two days in the hospital, 4 days in a hotel room, and then was off for the next 6 weeks.  I could have gone back in three, but I had the time and the doctor at MD Anderson wanted me off for six weeks, so I took it. 

 

Fight your insurance company, you have time.  These tumors grow and about 4mm a year.  so there is a good chance you've been carting this around for a few years.  So take a month or two and fight the insurance company.

 

You also might consider getting a second opinion.  I say this from personal experience.  Find a urologist who specializes in kidney tumors.  Ask your current doctor how many partial nephrectomies he/she has done.

When you have about 30 min check out this video.  It helped me a lot.  The doctor is a urologist at MD Anderson

https://www.youtube.com/watch?v=493RFA_tA1I

RussellD
Posts: 2
Joined: Oct 2019

Thanks for the replay Medic1971.  I'll take a look at the video. 

I definitely didn't expect this kind of a recovery time-- thought I'd only need to miss a few days, maybe a week at the most of work.  Both my doctors-- the urologist who will do the partial nephrectomy and the radiologist who was going to do the ablation went to bat for me and tried to appeal to the insurance company, but they absolutely would not give in. 

Both doctors say ablation is a good option and the tumor is in a position where it should not be a problem-- both also said they have never dealt with anything like this before with the insurance company rejecting the request.  I'm going to try to write the president of the company-- maybe when I bring up the money they will save it will get their attention, but i doubt it.  Here is their policy:

Radiofrequency ablation of renal cell carcinoma may be considered medically necessary for patients with small renal tumors less than or equal to 4cm when ANY ONE of the following criteria is met:

  • Preservation of kidney function is necessary (i.e., the patient has 1 kidney or renal insufficiency defined by a glomerular filtration rate of less than 60 ml/min/m2) and standard surgical approach (i.e., resection of renal tissue) is likely to substantially worsen kidney function; or
  • The patient is not considered a surgical candidate.

Radiofrequency ablation is considered not medically necessary for renal cell carcinoma that does not meet the above criteria.

icemantoo's picture
icemantoo
Posts: 3227
Joined: Jan 2010

sometimes there is recurrance after abalation. Also be prepared for more than 2 weeks downtime. I was 59 when I was nephed 17 years ago and my recovery was easing back to full time work after a month. Rememner the Doctor whp told you 2 week was holding ths scapel which is a little easier to recover from.

 

 

 

 

 

 

icemantoo

Allochka's picture
Allochka
Posts: 874
Joined: Nov 2014

Hi, 

Iceman is right - ablation gives a bit higher recurrence rates. Partial neph is much better due to this.

Also the ablation doesn't provide a chance to get good pathology report, which is crucial to correct follow up latewr on. You should know what exactly you have, and neph is best for it.

So please consider if you really need to fight for ablation.

 

Good luck,

Alla

Bay Area Guy's picture
Bay Area Guy
Posts: 385
Joined: Jun 2016

I had a slightly smaller lesion, same kidney as yours.  It was first discovered accidentally in late 2013, but active monitoring was determined to be the best course of action for me.  I Was hesitant about the surveillance, but I was assured RCC grows very slowly and the likelihood of spreading, given th3 size, was negligible.  So, active surveillance it was.  I had six month scans until April, 2016, when an ultrasound determined the lesion had grown by 0.1cm.  I was given the ablation vs surgery option.  The "success" rates I was given (remember this is three years ago) were 90%+ for ablation and 99%+ for surgery.  Despite hating the idea of another surgery (I had two previous abdominal surgeries for intestinal issues), I decided on the surgery, robotic/minimally invasive, because of the higher success numbers and because I wanted the lesion out, not just frozen or cooked.

Total Hospital time from check-in to discharge was 25-1/2 hours.  I went pretty slow on my recovery, mainly because I had the time as I am semi-retired.  The recovery was easier than my abdominal operations, but those two operations involved major incisions in my abdominal muscles and those things hurt when you move or, God forbid, sneeze.  The minimally invasive doesn't make large incisions, just a number of small ones.

As I said, I took the surgery option for the higher success rate.

eug91's picture
eug91
Posts: 159
Joined: Jan 2019

First off, welcome. Sorry you had to join us, but these are great forums - we've been through what you're going through, so we know you're going to do great. 

About recovery time. I had a robotic radical neph, so it's not quite the same experience, but-

My first week post-neph was spent just healing and getting my strength back. After one week, I was able to sit at my desk at home and do computer work for almost 4 hours a day. After two weeks, I was driving and back to my desk job. 

Obviously it depends on your line of work, but that was just my experience. 

APny's picture
APny
Posts: 1949
Joined: Mar 2014

My surgeon/oncolgist at MSK said that ablation is recommended for elderly people who are poor surgery risk and that the "gold standard" for everyone else is partial or full nephrectomy, depending on tumor size and location. With ablation there's no pathology and no way to get negative margins. I was totally convinced that surgery was the way to go. Perhaps you could arrange to work from home via computer? I really do believe that surgery is a better choice if unless you're high risk for it.

donna_lee's picture
donna_lee
Posts: 901
Joined: Feb 2009

But the tumor is 2 cm and was found by accident and now you have to wait till TG for a partial.  I think you are lucky.

The tumor is small, they found it, and surgery can remove it.  You've already drawn 3 aces.

Recovery can vary.  The down time is one of those un-publisized items that insurance companies don't talk about.  Dr's say 6 weeks because they become liable if you are still on pain meds, drive and have an accident.  One, you can injure yourself, especially if not healed yet. Two, auto insurance doesn't like you driving on meds because of the potential for a crash or causing a wreck with another car.

I drove part of the way home (5 hr drive) on my second surgery and surprised my friends at a local lunch shop 2 days later.

Patience will become a new virtue.  My son said something the other day regarding a frustrating incident at our office.  "Don't shut down, just keep the ball moving forward."

 

Best wishes as you enter a new stage of your life---being a cancer survivor.

Hugs,

donna_lee

a_oaklee
Posts: 447
Joined: Nov 2013

I think the insurance company did you a big favor.  You would never know via pathology what the tumor was and how aggressive it might be.  The best way to deal with it is to cut it out.  You have some time where you can plan for the surgery.   Disability insurance?  I wish you well.  There are lots of posts on here re postop partial nephrectomy.

jroco's picture
jroco
Posts: 23
Joined: Mar 2019

Dito, on all of the above. I had all the choices as you but after some research , I decided to have a partial via robotic. Though very scared to have it done, found it and recovery no big deal at.

thingone
Posts: 39
Joined: Feb 2019

You might have had your informed decision on your treatment. FYI, I just want to share my experience. Last December, I was incidentally diagnosed with a solid renal mass in size of 10x4x15 mm. I consulted with three urologist oncologists or surgeons, they all offered me three options: active surveillance, ablation plus biopsy, and robotic partial nephrectomy. But none of them recommended the ablation to me because of three reasons that were mentioned by other folks here. First, success rate of the ablation is lower than the surgery. Second,  the biopsy result is not as accurate as the pathology result after surgery since there is no way to be 100% sure if the mass is benign or malignant until it is entirely taken out of my body. Third, I am a good candidate and strong enough to have the surgery. I finally elected to go with the surveillance approach for some time first until I was spiritually, mentally, and physically ready for the surgery. Last month, I successfully went through a robotic partial nephrectomy treatment. I am on my way to recover and currently feel I have had recorded 80~90% of my pre-surgery status In terms of physical and mental strength. Good luck and best wishes.

Deanie0916
Posts: 259
Joined: Nov 2016

That you are in this club. I agree with the others for all the reasons above [Content removed by CSN Support Team]. Good luck let us know how it works out for you.

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